The unveiling of Sonia’s gravestone was held over Memorial Day weekend.  It was a beautiful sunny day, just like it was on the day of her funeral.  We were surrounded by family and friends that came from near and far.  The atmosphere was different than when we gathered there last September.  I felt like we said goodbye to her then, where as we were saying hello and we miss you at the unveiling.

The rabbi that lead the funeral had to cancel at the last minute to due an illness in his family, but he had a friend come in his place.  He did a wonderful job and even though he barely knew our family, he gave an excellent sermon and honored Sonia well.  There was an airshow going on nearby for fleet week, and some beautiful classic planes flew overhead during the ceremony.  While some might have found this distracting, the pilot in me thought it was a fitting tribute.  I’d like to think Sonia arranged it for us.

The stone itself is beautiful.  Shannon and I put a lot of thought into the design and it came out just as we had hoped.

The permanence and finality of the memorial were sad and comforting at the same time.  It reminds us of her passing, but it gives us something physical to touch and see and remember her by.  Faye did not attend the ceremony, but we all came back the following day to visit with Sonia and place rocks on her gravestone (a Jewish custom).  Faye did real well and it was touching to hear her talk about sister. 

Faye is a real “gatherer” whenever we go outside.  I often come back from our walks with my pockets filled with rocks (at her request).  What we have started to do is pick one special rock from each of our walks and place them in a special box for Sonia.  Now when we go visit her, Faye can bring a little piece of home to Sonia.

We can’t thank Marv and Nathalie enough for opening their house to us and our family for the reception following the ceremony.  You both made what was going to be a quick get-together into a warm family gathering.  Thanks to all who came to honor Sonia.  We hope that this was just one of many visits you will make to her graveside.

We owe a great deal of thanks to our friends, family, and especially Rabbi Freid from Chai Lifeline for helping with the arrangements for the funeral.  Shannon and I had no idea how much was involved in planning a funeral.  It was the last thing we wanted to deal with while we were grieving.

Rabbi Freid, who only knew Shannon from brief visits at the hospital, made all the necessary calls and arrangements.  We really can’t thank him enough for his efforts.  There was some last minute shuffling, but my family found the necessary papers for the family plot in New York.  Our parents also took care of notifying everyone, so we didn’t have to.  It is Jewish tradition to bury the dead quickly, since we believe the soul cannot fully rest until the body is in the ground.  We were also constrained by Rosh Hashanah starting Wednesday evening.  Baruch Hashem, everything fell into place and Sonia was honored properly.

The service was very nice.  It had been raining and miserable all week, but the skies opened up and the weather was beautiful.  Despite the short notice there were over 50 people in attendance.  Being around the people we love was an incredible comfort to Shannon and me.  Family carried the small coffin to the grave site.  The rabbi said some very nice words.  Being so far from home, it was especially nice to have a rabbi who knew both Shannon and Sonia and could speak about them.  After most of the formalities, I said a few words.  I saved the paper and here is what I said,

I can’t imagine a worse task than burying your child.  Today brings us great sadness and pain.  It may have appeared that this whole experience was filled with only sadness and pain, but Sonoa was really a tremendous source of joy.

When Shannon and I first learned that Sonis had a broken heart we were crushed.  We vowed that no matter what happened, if we had just one day with her, it would be a blessing.  Little did we know that we had such a fighter on our hands.  She gave us four wonderful months and we cherished every day and every minute with her.

Sonia will never roll around on our family room rug, she’ll never run in our yard, never learn to ride a bike, read from the Torah, or dance at her wedding.  But one thing I’m sure of.  During her brief stay here she knew love.  Love from her parents and love from friends and family all over the world.  Sonia touched so many people.  You could even see the love for her in her doctors’ and nurses’ eyes.

It’s hard to imagine being proud of an infant, but that’s what I am.  I’m a proud dad. That little girl fought so hard for so long with the heart that God gave her.  She taught me so much about courage and strength.

Sonia was named after my grandmother Sonia, another woman with an incredibly strong will.  I know my daughter did her namesake proud.  It gives me great comfort to know that the two Sonias are together now and that my daughter is in the warm comforting arms of her great grandmother.

Sonia, I love you with all my heart and I am so proud of you.  May God grant you peace and rest.

We spent the rest of the day with our friends and family.  We were only able to sit shiva for a few hours, as the holiday breaks our period of mourning.  We’ll continue to mourn Sonia in our own way though.  High Holiday services were strange to say the least.  I think the davening and introspection helped at times, but was difficult at times too..

We have had several people ask about what they can do for us.  We are actually doing OK for now.  Love and support is all we need.  If you want to make a donation in memory of Sonia, we would like to suggest a few options:

• Chai Lifeline was an incredible help to us through this whole ordeal.  They go out of their way to support Jewish families dealing with chronic illness and extended hospital stays and ask for nothing in return.  They came to the hospital daily to deliver kosher food or just visit with Shannon & Sonia.  Rabbi Freid took care of all of our needs when Sonia passed and Chai Lifeline paid for the majority of the funeral expenses.  We are forever indebted to them.
• The Philadelphia Ronald McDonald House gave us a comfortable place to stay during the many months we were in Philadelphia.  I never knew what RMH was, but I can’t overstate what a blessing they are to families of sick children.  Lodging is only one part of it.  They make a tough time for anyone a lot easier.
• CHOP Cardiac Center – Congenital heart defects affect nearly 1 in 100 babies.  It is the most common type of birth defect.  The staff at CHOP are leading the way in research and treatment for CHD.  We would like to think that Sonia did her small part to help doctors learn more about these disorders and our loss will help to save lives in the future.  Your donation could also help to save future CHD kids.  When donating, be sure to select “Cardiac Center” from the drop down list.

With this, I think we will close out “Sonia’s Story” on the website.  She will always have a special spot in our lives and her story will always be here to give hope and inspiration to all who see it.  I’m so glad that the world was able to meet her and we could share the joy she brought us.

To all the wonderful friends we met along the way, we hope you will stay in touch and keep up with the Rubins on the rest of the site.  We really couldn’t have gotten through this all without you.  We would love to hear how all of Sonia’s friends are doing over the years.

I believe Sonia was under heavy sedation throughout the entire day, so she did not suffer.  The doctors and nurses worked with all of their might from that point until about 6:30 pm.  I could see tears in their eyes and strength in their resolve.  They loved my little girl and wanted to give her every chance they could.  At about 6:30 pm, the head doctor at the bedside looked up at me with tears in his eyes and asked if I wanted him to start chest compressions.  Holding back his cry, he told me he didn’t think there was anything more they could do.  I told him no and began to cry myself.  Somewhere inside I found the strength to speak to my little girl.  Up until that point I had been telling Sonia to wait for Daddy, and that Daddy was coming.  But at this point, I told her to go home to God.  I told her to go to sleep and rest.  I said the Shema to her because it is our custom that it should be said when a person is going to pass.  I told her everything I had to say and how proud we all were of her.  I told her she was loved and I told her she would never be forgotten.  I even joked that her Bubbies would probably fight over her in heaven, but that she should go to their open arms.  Finally, I promised her that Daddy and I would find her in heaven and continue our cuddles when we get there.

Dr. Chitra Ravishankar, the transplant doctor, came to my side at this point.  She has a very maternal quality about her and I found her to be such a comfort at that moment.  As I looked around Sonia’s bed at all of the doctors and nurses, I saw love for my child.  Their tears were as much for their own loss as it was for mine.  I knew that I was surrounded by a family, and I found such comfort in that.  Chitra spoke calmly to me and held me as I took in the moment.  I thought I would melt right there, or at least faint, but with her strong arms and words, I made it through.

Slowly the doctors and nurses cleared out of the room and left me to hold my baby girl’s hand.  My friend Vicki Haller showed up shortly after this point to be with me and comfort me.  Around 7:00 pm, Dr. Tabbutt came into the room and told me to sit in the rocking chair.  She helped to unhook Sonia from almost everything except for the breathing tube.  At this point she placed Sonia in my arms and gave me time to say my final good bye and to kiss and hold her before she removed the breathing tube.  These were exceptionally beautiful and calm moments for me and I am forever grateful for them.  After a short time, Dr. Tabbutt removed the breathing tube from Sonia while I continued to rock her.  I sat with Sonia in my arms like this for over 3 hours.  I kissed her and touched her face and played with her toes.  She was wrapped beautifully in her blanket and it felt as if she were asleep in my arms.  During this time, I was surrounded by love.  Dr. Tabbutt, who had come from home twice for me at this point, sat by my side for a long time.  She talked about this journey with me as if we were friends.  We had been through so much together.  There was also a steady stream of loving nurses who came to say good bye to their girl and to me.  It felt so natural to be holding Sonia while surrounded by nurses and friends.  I know I will treasure those hours forever.

Of course the hardest part of this time was telling Jason.  When we realized Sonia’s situation, he got in his car to drive up to be with us.  He didn’t want to fly for fear of getting stuck somewhere or having to spend lots of time sitting instead of moving towards Sonia.  So when she died, I had no idea what to do.  Jason had been calling for regular updates from the road and while I didn’t want to tell him while he was driving, I knew he would want to know.  When he called I asked him to give me a call when he was pulled over for a complete update.  With Sonia still rocking in my arms, I gave him the news.  I believe it was calming and comforting to know that I was calm and that we were sharing such a beautiful moment together.

During all of this time, Rabbi Freid from Chai Lifeline was by my side as well.  Chai Lifeline is an organization which supplies families of children in the hospital with a steady supply of food and visitors.  They were an amazing comfort during Sonia’s life and even more so in her death.  It only took one call to the Rabbi to get him to the hospital.  From that point he took over answering all of the difficult questions.  He made all of the calls and provided as many answers as he could.  In a comforting way, he helped me to make the best decisions for my family, being ever so careful not to pressure me in any direction.  Knowing that this part of the process was being taken care of was such a relief to me.

Around 11 pm I put Sonia back into her crib.  I knew somewhere in my heart that it was time.  We put the bed back the way she liked it and covered her with her blankets.  Vicki stayed with me and comforted me throughout until Jason arrived around 1:30 am.  Together, we said our final good bye to our baby girl and walked out of the hospital together. 

Although this day was one of the most difficult in my life thus far, I feel confident that I will remember the good moments well.  If I had to say goodbye, I am glad it was this way with her in my arms surrounded by love.